A Great Week...

Well, this week started out really great and kept getting better!  Elise has been on a roll all week long...gaining several ounces each day!!  She is now over 13 lb and about 25" long! I'm so happy, I can't stand it.  I look forward to weighing her, but I'm trying my best not to do it every single day.  I really wish we could lose the tube this week when we go to "liver clinic," but I have a stinky feeling that the doctor is going to want to keep it in to get a little more of a cushion.  We're just really not a fan of the tube...it's such a pain...and Elise pulls it out, on average, at least once every other day.  Each time she pulls it out, David has to put it back in...and it's seems like it's so hard on her.  And hard on me!  

Getting' my chunk on!!  LOL!!  Check out my thighs!!

And we need to say "thank you" to one of my "liver mom" friends who made a sweet BA/ transplant awareness bow for Elise!!  It's really cute and very special to us!!  We LOVE it!!  She also made a wreath for me, which I will be bringing to work to hang in my cubicle!!!  Here's a pic of Elise wearing her bow....I'll post a pic of the wreath too when I get to work on Monday.

Elise wearing her BA/transplant awareness baby bow, made especially for her by our friend, Danielle!!  Thank you Danielle!! :-)

Anyway, Elise is doing really great at daycare!  Ethan too of course, but Ethan has always done great there!  Elise has become so much more active since she's been gaining weight.  She started enjoying tummy time, and she also spends lots of time in her jumper/ exerciser!  Her teacher was thoughtful enough to send me another picture while I was at work....this kind of thing just makes my day!!

Around the middle of this week, all my work with the insurance company (and I don't mean my 8-5 job) finally paid off!  Our insurance company delivered 36 cans of Pregestimil to our door!  What a lovely sight!!

Today, we started off the weekend with a little family trip to the Children's Museum in Houston!  It was fantastic, and Ethan had a blast!!  It brought back lots of memories from when I was little and visiting the Children's Museum in New Orleans.  I remember the little "supermarket" exhibit was my favorite!  Ethan's favorite was the "Tot Spot!!"  We spent a couple hours there in the "Tot Spot," and let me tell you...it wore him out!!  Anyway, this is going to be one of our new favorite places to visit on the weekend for the next few years!!

"Beep Beep!!  Move out the way....I'm coming through!!"  

And that's all I have for now....thanks so much for checking on us!!  We love you all and appreciate all the prayers and support!!!  

Chunky Monkey

You all can just go ahead and start calling Elise "Chunky Monkey!"  Today she weighs 12 lb 11 oz!!  She's on quite a roll...gaining a couple of ounces each day...and speaking of "rolls," she appears to have developed her very first fat rolls on her thighs!  Yay!!    She's doing SO well with her feeds every day.  She's eating about 18 oz of formula via bottle during the day (27 cal/oz Pregestimil +3 cal/oz Polycose + MCT oil), then she is getting 12 oz of that same formula mix overnight via NG tube!  And today, I fed her  some sweet potatoes on top of her regular diet....well, actually, it was a sweet potato  casserole of sorts...including sweet potato baby food mixed with Polycose powder, Agave syrup, and butter.  I think David was almost jealous....it probably reminded him of the carrot soufflé at Picadilly....LOL!!  

Anyway...I have other good news to report from "Liverland."  This has been quite an exciting week!!  Three of our little "liver friends" who have been listed for transplant for a while now received their brand new livers!  Little Laila, Shelby, and Emmalyn all had successful liver transplants this week and are recovering very well.  SUCH wonderful news!!  Of course, none of this would have been possible without three families making the choice to donate life....to donate the organs of their loved ones who passed away.  My thoughts and prayers go out to those families.  

And all of this is actually happening in a special month-- April is "Donate Life" month!!  If you would like to be an organ donor and have not already documented your wishes, please take a moment to follow the link below and register to become an organ donor.....you will be literally saving the lives of others just like Elise.  

http://donatelife.net/register-now/

Woo Hoo!  12 lb 11 oz.....packing on the pounds!!

YAY for me!!!!   

Happy girl!!  

First time in the jumper today!!  

Bring on the Pounds!

Well, I'm still no fan of the NG tube....but I must say it does seem to be working.....quite well!  I am thrilled to say that Elise has gained just about one whole pound since last week.  She now weighs 12 lb 7.5 oz!!  She is tolerating her overnight feeds via the NG tube fairly well at 30 mL/ hour....and she is now taking several bottles during the day too!  I can really see the difference in her face since she has gained some weight....and it makes me SO happy!!

OH....and in other big news this week...my relentless appeals to our insurance company to cover Elise's formula Pregestimil have finally paid off....literally!  I contacted Medco--the company that manages the pharmacy benefits under our plan--and I was told by a Medco representative that my benefits cover the Pregestimil when prescribed by a doctor...only when the prescription is faxed directly to Medco and written out for a 90-day supply.  No problem.  I had the doctor fax the prescription to Medco immediately upon being told this, and I received a reply that 36 cans of Pregestimil would be shipped to me within the next week.  That saves us about $1000.  Peachy!!  :-)

I'm bringing Elise in for a check-up and weigh-in at the pediatrician's office on Tuesday.  Mainly I want to make sure that her ear infections have cleared up and that her lungs sound good.  Then, we have our next "liver clinic" appointment at Texas Children's on May 2nd. Since I had to take the day off of work that day anyway for this appointment, I went ahead and scheduled vaccinations for both Ethan and Elise too on that day.  Elise needs her 6-month shots, and Ethan needs his 18-month shots.  Last time I brought them both for shots on the same day, I swore I was never going to do that again....but...now I'm thinking I just as soon get it all over with at one time.

Anyway, here are some pics from the past few days...

my sweet girl...

Starting an overnight feed....her feeds run for 12 hours at 30 mL (1 oz) per hour..

"Hi Mommy!  It's a brand new day!!"

Story time...

A Long Week

So, for those of you that don't know, Elise was admitted to the hospital this past Monday with Pneumonia, secondary to the Flu and Adenovirus. She was immediately started on IV antibiotics Vancomycin and Zosyn, and was put on Oxygen for a couple of days, along with breathing treatments. She is now doing much better and was actually discharged today.

Elise came home tonight with a new accessory though-  the NG feeding tube. Although it's not what I wanted for her, I have to admit that it's the best thing for her right now.  She is almost 6 months old and is the weight of a 3-month old. Also, the doctor said that her weight-to-height ratio is not even on the growth charts, which puts her heart at risk. I mean, who can argue with that? SO, they placed her feeding tube prior to discharge today. She will eat by mouth normally throughout the day, but at night, we will use the NG tube for overnight feeds-- 1 oz per hour x 12 hours each night.

My mom and dad are here with with us now.  It is such a blessing to have their help with Ethan and Elise right now.

Anyway, here are some pics from the past week...

Little Elise was just about coughing up her lungs in the emergency room.

Finally getting a little rest...

Starting to perk up...playing with a new toy!

My sweet angel...Mommy loves you SO much!!! :-)

Well Hello Miss Elise....always smiling, no matter what!

Elise's newest accessory...the NG tube.  

On another note...I met the liver doctor of my dreams while Elise was in the hospital!  Relatively speaking of course, as I have never actually dreamed of meeting a wonderful liver doctor, or even needing one for that matter.  Her name is Dr. Abrams, and she is one of Elise's doctor's partners....so really she is already part of her "liver team," but this is the first time I've gotten to meet with her.  Anyway, she's awesome!  She  talked to David and me for over an hour and answered so many questions that I've had lingering on my mind. She was very straight-forward but still maintained a sense of humor, and she had the most positive attitude I could imagine.  

So the best news I have to report, aside from her being safe and sound at home with us now, is that Elise's liver enzymes have actually continued going down...never even spiked as the doctors predicted...even in the face of the Flu, Adenovirus, and Pneumonia.  I call it a Miracle.   

Elise had liver panels drawn daily in the hospital, and here are the results:

                                         4/9/12                       4/10/12                        4/11/12

AST                                     94                                72                                66    

ALT                                     95                                84                                67

Alk Phos                            459                              364                              317

GGT                                  2347                            1775                            1602

Albumin                              4.3                               3.8                               3.4

Conjugated Bili                  0.0                               0.0                               0.0

Happy Easter!!

Happy Easter!  Well haven't done a whole lot on this Easter weekend....but we spent the time well together...just us, as a family.  We switched out some of Ethan's toys and watched him re-discover them., which is always entertaining.  On Easter morning today, Ethan and Elise found their Easter baskets in the living room....and Ethan could hardly believe his sleepy eyes!! After Ethan emptied both his and Elise's baskets, Elise sat inside of her basket for a few minutes, just to show that she could...lol!

Although the kids' baskets did not contain any candy, the baskets that the Bunny brought for David and me did....and Ethan wasted no time in trying out some of the Peeps!  I sure wish I could feed Elise some of that candy....she could use it.  She is still losing weight due to her decreased appetite and vomiting related to her virus. This morning she was down to 11 lb 8 oz.  I can't even begin to explain how this frustrates me...and scares me.  I'm just praying so hard that things turn around soon so she can start gaining again.  Anyway, I'm not looking forward to this week's liver clinic.

But, I'm trying not to dwell on the negatives when there are so many positives.  We are so grateful to know that even if Elise's labs don't improve, and even if she doesn't manage to gain any weight, there IS something that can be done to help her....even if I don't really care to think about it right now.   But you know...since the subject has presented itself...I was just talking to one of the doctors with whom I work, and he suggested that it might not be a bad idea to actually have a consultation with the transplant surgeon, if possible.  I am constantly seeking out as much information as possible, so in keeping with this, maybe the transplant surgeon could give us a better idea of what exactly stands between Elise's position now, and the need for transplant.  THAT would be something really great to know....I think.

Okay, well, on a happy note...here are a few Easter pictures!  ENJOY!! :-)

Elise, wearing her Easter dress from Nannie Rachel and enjoying her very first Easter basket!

Ethan can't believe his sleepy eyes....

My two little hatchlings, Ethan and Elise, on Easter morning.

Little Elise and her proud big brother Ethan!

Elise lounging around in her Easter basket after Ethan emptied it for her.

Who Knows?

Oh, who knows what Elise's liver is doing right now. Any labs we get are going to be skewed due to her current illness- Adenovirus- with which she was diagnosed this week. I took her to the pediatrician on Wednesday after several days of coughing, wheezing, vomiting, and conjunctivitis in her eyes. The doctor ruled out RSV and pertussis and made diagnosis of Adenovirus. OH, and she also has a double ear infection...just on a side note. So her doctor warned us that this stuff tends to cause a spike in liver enzymes, which means that any liver panel/ labs we get in the next week or so will probably be freakishly high and not necessarily reflective of the true functioning of Elise's liver. Wonderful. Because I have no problem at all with "not knowing" what exactly is going on.

She's been started on some meds, including the antibiotic Zithromax, an oral steroid Millipred, an inhaled steroid, a bronchodilator med Albuterol, and eye drops for the conjunctivitis.

ANYWAY, Elise does have a "liver clinic" appointment next Wednesday 4/11/12. To be honest, I am very apprehensive about this upcoming appointment, because I have a looming feeling that her treatment team will decide to go ahead and place an NG feeding tube. She has lost several ounces over the past week or so; she lost 8 oz to be exact. She currently weighs 11 lb 11 oz. Of course, we will go along with whatever it is that is recommended for her. I just hate to see Elise uncomfortable, and that feeding tube makes her very uncomfortable. Also, we KNOW that the reason she has lost weight is related to her acute respiratory infection-the Adenovirus- not her liver. So I would like to give her a chance to regain the weight on her own once she is rid of this virus.

So the bad news is that Elise has been sick with a respiratory virus/infection and ear infection and has lost weight. The good news is that she's on meds and is starting to feel better, so she should be on the upswing again soon. She has already perked up and seems to be feeling much better. I can't say that my number of hours of sleep at night has improved much though.....ahhh, the little things. It doesn't matter. I actually enjoy my time up with her at night....just me and her.

Before the meds, poor baby was struggling to breathe and sleep...couldn't get comfy. 

Elise is starting to feel better on the meds!!